Helen Moore and Wilfred McSherry discuss patient confidentiality and privacy of data in the context of pharmacogenomics, which involves using blood and tissue samples to study how patients’ genetic make-up affects their response to drugs
In the UK in 2010, 325,000 people were diagnosed with cancer with one in four dying from the disease. Cancer research is therefore a healthcare priority. Over the past two decades, more people have been cured and, of those who are in the palliative stages of disease, more are living longer.
There is a need to develop research further by obtaining blood and tissue samples from patients, that is, translational or pharmacogenomic research, which is often carried out alongside clinical trials. This article explores the ethical implications of consent in translational research and the need for healthcare professionals to be aware of the following issues: confidentiality and privacy; feedback of results; property rights and ownership; and consent when the exact nature of the research is often unknown.
While these issues are not insurmountable and could never justify abolition of such research, they require careful consideration.
Cancer Nursing Practice. 12, 10, 22-26. doi: 10.7748/cnp2013.12.12.10.22.e1002
Correspondence Peer reviewThis article has been subject to double blind peer review
Conflict of interestNone declared
Received: 01 June 2013
Accepted: 07 November 2013
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